What is CFS / ME? An introduction to pacing

CFS /ME is a complex illness. Current research has shown tha there can be a range of factors that cause an individual to develop it and theories suggest that it may be a combination of physical and psychological factors. Genetics may also play a part as you are more likely to develop it if there is a family history.

Some predisposing factors include stress, lifestyle and personality may make it more likely someone will develop CFS / ME. While we cannot change the predisposing and triggering factors we can work towards reducing the factors that uphold the symptoms or make them worse.

• Muscle / joint problems,
• sore throat,
• headache,
• dizziness,
• sweating,
• poor concentration,
• memory difficulties,
• sensitivity to light,
• twitching muscles,
• drowsiness,
• post-exertion exhaustion,
• nausea,
• sleep problems.

Due to persistent fatigue, when sufferers do have some energy it can be easy to slip into the habit of trying to do too much. We call this the boom and bust cycle. On the days you have energy you have a boom of activity, but this is followed by a bust as energy is required for recovery.

This can become a vicious cycle that can maintain your ME / CFS.

You can find more about this cycle in the Boom and Bust cycle section.

Introducing pacing into your routine

Planning ahead is really helpful. Generally, you will plan the coming week's targets with the ME / CFS team in the diary review session.

• Find out your baseline
  Before you start it can be really helpful to keep an activity record for at least a week to see what you are managing to do on a good and a bad day to record a baseline of your activity.
  From this you can set minimum and maximum levels of activity to do regardless of whether it is a good or bad day. The idea being that your activity is evenly paced across both good and bad days.
• Spread it
  Spread rest and activity evenly through the day, in small, achievable chunks. For example, rather than taking a 45-minute walk; take a 15-minute walk 3 times a day.
• Plan rest
  It is very important to plan rest as well as activity consistently. Instead of resting when you feel tired, plan rest at set times during the day, for set amounts of time.
• Avoid daytime sleeping
  This is more likely to increase sleep problems at night. Establishing consistent bedtime and morning routines can also help (More on sleep in a later session).

What to expect

• Feeling more tired than usual
  At first you may find yourself feeling more fatigued. This is normal and temporary! It does not mean that the treatment is not working, or that the illness is getting worse, or that you are damaging yourself. Your body just needs time to get used to this new pattern of planned, consistent rest and activity. With time your body will get used to the new pattern and the symptoms will stop by themselves.
• Feeling worse before you start an activity 
  You may also feel worse just before starting an activity: again this is normal, and often linked to apprehension. Once you actually start you will probably feel better.
• Feeling tempted to do a bit extra
  Sometimes it can be tempting to do more than you planned, especially on good days. However, stick to your pre-set goals, otherwise this may lead you back to a cycle of boom and bust. Instead, see it as an opportunity to build up your energy reserves.
• Setbacks
  Setbacks will occur from time to time and this is perfectly normal. Try not to feel too disappointed if this happens. Instead, expect it and try to stick to your pre-planned goals as much as possible. Remember it is the overall trend over weeks that is important and not the odd off day or two.

• Diary
• Guidance